I have not been diagnosed with anything but hyperthyroidism which is still not being treated. I had a thyroid ultasound, one side was larger, not the painful side.

I have been seen for ongoing issues, but no one seems to give me an answer. I am scared about what the diagnosis may be.

Symptoms:
ALL ON LEFT SIDE of neck/jaw/tongue/ear/shoulder

My gland seems very tender and swollen almost always. If I push there, it seems like something is pushing and hurting the base of my tongue, far and deep into my mouth, almost throat/under jaw area.

sore throat that lasted the majority of 3 years after a bad chest infection, finally healed in May
after the right antibiotic, a Z-pack

Left shoulder, neck, jaw, and tongue pain

Same side on tongue swells and has a burning, sometimes tingling sensation

Neck also swells and becomes stiff from jaw to collar bone, almost daily

I feel a small knot, pea sized, in the side of my neck, down towards my collarbone and another seems to swell in my face, cheek/jaw area

I have had blood tests show hyperthyroid in May also rapid pulse 90+ always for a few years now.

my neck cracks alot, also shoulder

Now, My periods have recently stopped. I'm only 34

I do have symptoms of the hyperthyroid: exhausted, insomnia, irritable, frequent BMs, the rapid pulse, low B/P

I also had a back and neck injury in January while lifting, but the only difference I notice is that my lower back now hurts and my neck grinds and hurts in a different area, on my spine/ base of my skull.

my jaws both pop and click from misalignment. But it was never a problem or painful until the swelling and pain began. Many think I just have TMJ.

This seems like much more than that.

I think because it is not obvious they don't think it is that painful or serious.

I can't take it much longer.

I have had a CT scan and MRI of the head and neck, but they say there are no masses.

With the pain and swelling I am having I can hardly believe this. I feel like I have pressure and pain from something in the area under my jaw, in my neck and tongue/ear.

It hurts terribly, so much that it makes me feel like I am crazy. I saw an ENT, but he hardly examined me. He just went by the test reports.

It has gone on for so long and keeps getting worse. I can barely function to go to work most days. Many days, I swear I will go to the ER and sit there until someone finally deals with me. Once I even sat there for 3 hours as injured and coughing people passed me by and I got frustrated and left. I have a high threshold for pain and have dealt with it for so long, I just keep on putting up with it because no one takes me seriously!!!!!!!!!!!

I am so sorry for those of you suffering with your illness. I don't mean to be a big cry baby. I'm just scared and wondered if this sounds familiar.

Thanks and I will keep you in my thoughts.

Bran'sNana

10-28-2006 12:56 PM

Re: Help, MANY ongoing symptoms...

my dear over-stressed, WHY aren'tyou being treated for this? No bloodwork, no thyroid scan? That's CRAZY!! True hyperthyroid left untreated causes heart probs and osteoporosis. What are your lab results? Are you seeing an endo? You should be. A scan and bloodwork will show Graves disease. Or nodules. Nothing life threatening,treatable. I just have hyper t-3 and am being treated with meds, but had same symptoms, except the thyroid wasn't swollen or painful.

OverlyStressed

10-29-2006 11:29 AM

Re: Help, MANY ongoing symptoms...

I did have blood tests in May that showed high levels and my MD said it was hyperthyroid. The same tests a year before were normal. I had the thyroid ultasound too and they said it only showed that one side, strangely not the painful side, was larger.

But that was it. No referral to an endo.

My first mother, sister and first cousin all have hypothyroid. Cousin's is believed to be Hashimotos. So, they really don't have any knowledge of this side of the spectrum. My sister also has RA. I know it tends to run in families.

I am calling my doctor for a referral to an endo. Problem is my husband changed companies and is getting new health insurance who will probably consider this a pre-existing condition.

What kinds of tests should I be getting? I'm sure more blood work, but what is the difference between the ultrasound and the scan? I had an MRI and CAT scan they say showed nothing there.

Thanks for your advice.

Bran'sNana

10-30-2006 07:27 PM

Re: Help, MANY ongoing symptoms...

My doctor suspected graves and I had a thyroid scan. It involves taking a small bit of radioactive pill and going back the next day. It's called the uptake test too. Mine was normal. Another poster, Nikki, says a ultrasound is sufficient in showing abnormalties. She had problems after the test,(scan) with her eyes watering.I remember, now feeling a bit more hyper after. You have a lot of thyroid problems in your family, it's inherited, even though they weren't hyper. Auto-immune disease. A free t-3 and t-4 and antibodies testing should be done too.

OverlyStressed

08-29-2007 10:22 AM

Here I am still searching for answers. 1yr. later...

I was searching for answers, STILL..... I found my own post. It is almost 1 yr. old now and I have no relief.

I had blood tests that show ongoing elevated WBC, only 1 time was it normal at 10,200. My thyroid was better.

I now take Neurontin, Flexeril, mobic, ativan and vicodin. But I am still in constant pain. Unless I do like I do because I cannot function to go to work, so I double up 2-5/500 vicodins and then run out and feel like a junky and cannot function to do much of anything until I go back to see the doc for a refill. He has been giving me the same low dose for 1 yr. I keep telling him it is not working for me and what I must do to get by.

He doesn't care. No doctors seem to take me seriously. I am in terrible pain all the time and it never goes away.

Right this moment, I have:

swollen feeling and pain in my left face/jaw/tongue/neck/shoulder
burning sensation in my tongue and down my left arm
My entire neck is stiff and hurts to look up or side to side
I have pain and tightness under both shoulder blades, near my spine
My right arm feels cool and tingly when I look up or move my head forward
This all causes me terrible anxiety as well
I have pain in my lower back and down into my leg and ankle it feels tight
My jaw does pop on both sides annd grind and always has, but this seems like way too much to be TMJ

I don't know where else to go or what to do or the BIGGEST question, WHAT IS WRONG WITH ME??????????

Every doctor tells me to see a psychiatrist. Yes, it is causing me mental issues, but I am NOT crazy and I feel insulted.

mkgbrook

08-29-2007 11:17 AM

Re: Here I am still searching for answers. 1yr. later...

Have you routinely had your TSH, free T3, free T4 run as well as the one time testing for specific thyroid antibodies TSI, TRAb, and TPOAb, TGAb? Ask your MD to run the antibody tests because the disorders are in your family make up. There is no reason why even your GP or OB should have an issue with this. I recently had to bend my GP to my will and get the same done. Now I am beginning the battle of getting treatment versus just being watched.

I know it is rough to find answers because many physician lack the proper desire to heal, but if you have these tests performed you can rule out the thyroid for now and look in a new directionfor the source of your pain and discomfort.

Sincerely,
MG

OverlyStressed

08-29-2007 02:13 PM

Re: Here I am still searching for answers. 1yr. later...

Thanks! I will write these down. I've had someof those checked twice over 2 years.

Did you get a diagnosis, atleast? I wouldn't be ok with being "watched" with any serious conditions.

My sister has RA and she's had her share of battles with the doctors to get a real diagnosis, herself. it's just awful to have to feel this way and either not be working towards a diagnosis or at a minimum, prsecribing proper pain management. I think a big problem is that many people around my area have been abusing prescription meds, narcotics in particular. But, it's made my life hell trying to be treated so I can function to continue working my job. My sis had to get SS and every time I go to the pain mgmt. doctor, he asks me if I'm still working. I say well, yes I have 2 kids and bills to pay. I've even went so far as to explain to him the type of employment I've had to take in order to have no physical trauma, lifting etc. I work with a woman with a brain injury. it's a good job for me and it's very satisfying work feeling like I am helping someone, but the mental challenges are very trying. And it's tough to concentrate when you feel the way I do. My job is mainly giving direction and rationalizing situations and safety. I do not want to have to stop working. It keeps me sane, I think.

Bran'sNana

08-29-2007 02:38 PM

Re: Help, MANY ongoing symptoms...

Hon, get yourself to an orthopedic surgeon, or even a chiropracter. All your symptoms sound like a neck problem, a pinched nerve. You need an MRI. Have you had one of the neck? Also if your labs are still hyper(post them we'll tell you) that will cause you to have pain too. Thyroid disease causes various types of pain and inflammation, muscle and joint. You need to see an endo at least. Can't you make an appointment on your own? You're on too many pills, they'll just mask the symptoms, not the source of your pain.

mkgbrook

08-29-2007 10:04 PM

Re: Help, MANY ongoing symptoms...

Still waiting on my TSI and TRAb to return. They should be in tomorrow. Argh. Then I will know. I am pretty sure I have Hashi's and Graves given my cyclic symptoms and first pregnancy issues. We shall see though.

Sincerely,
MG

ellie_downunder

08-29-2007 11:05 PM

Re: Here I am still searching for answers. 1yr. later...

Hi OS, :wave: I have been reading your posting with interest, I have a multi nodular enlarged Thyroid but my tests are within limits, I also had many symptoms that I thought were due to Thyroid as there are many things that can mimic its Symptoms.

I felt tired all the time, no energy, My tongue and throat both hurt, pain between my shoulder blades, under my ribs plus a lot more
I saw an Endo and she did not want to treat me just wanted to monitor me
I was angry because I knew their was something wrong but the Thyroid labs told her another story.........I think she just thought I was a Hypo - Chondriac :D

It turned out my symptoms were getting muddled but it took a good GP to listen to me and find what was wrong.

My tongue was sore and smooth and I was so tired, I also have an Elevated white cell count, I was diagnosed with Pernicious anemia which has simular symptoms to Thyroid, and the reason for the high wcc was because the anemia causes the red cells to be effected and I did not have enough of them, I have always eaten well but my stomache wont absorb B12 and I will now have to have b12 shots for the rest of my life,

The pain between your shoulders and neck could be from stress it takes its toll on our bodies and you would be surprised just how tense mussels become
but at the same time I would be requesting an upper Abdom to check your gall bladder and other organs.

You say you have a high tollerence to pain I did too and ignored things for years that I should not of, all because I was worried the doc would think I was a like fudge, sweet but nuttie :D

I am 47, I have Liver damage ( non alcho ) and I am diabetic + the anemia and a few other things :dizzy: if my Gp had not bothered to give me a full check up and begin to find the answers, (Some of them I dont like because it means a change in lifestyle and I love my food ) I think my future would be grim.

PLEASE FIND ANOTHER GP ! and dont give up, You and your family deserve better, your symptoms might be muddled like mine were because of more than one issue with your health , it is worth asking for your b12 to be tested, Your body is telling you there is something wrong so listen to it and dont let anyone brush you aside :nono: Oops I am late, I talk too much :o